Ugh tomorrow

Tuesday, February 28, 2017

Well I'm laying here in bed with enzo by my feet snoring and Harlow is some ridiculous position that is beyond me how it is comfortable becaus that seems to be the only thing that works anymore she's been changed three times due to spit up and not formula spit up acid spit up u can smell how sour it is... bobbys out of town so it's just us for the first time and I wish he was here her Appointment with the GI specialist is in the morning and I'm so nervous I'm not sure why tho I'm hopeful that I'll have my baby back again not the wooden board I've been carrying around cus she refuses to bend under any circumstances so litterly imagine holding a wood pallet that's what it's like to hold harlow but while she's wiggling trying to get comfy which is impossible and all the whole crying.. non stop crying.. I've felt helpless for my daughter since day one and it's as if it's a cruel joke being played on me at this point of how much more can we make this girl feel helpless I've had to desensitized my self to extremely that I know there's things that should absolutely floor me but I've grown so cold and paralyzed to a lot of it it bothers me a lot but I think it's also my brains way of protecting it's self I still feel sick to my stomach when she has her seizures but she's so fussy and in pain because of her stomach now days it's just a constant can't put her down can't put her in a swing can't put her in her car seat can't put her over your shoulder the list goes on and she was sleeping thru the night now she's waking up every 1 1/2 hour cus she's hungry cus she spit up half her last bottle so we then start the process all over again to just do it all over again this isn't me bitching tho truthfully it's not it's just frustrating not being able to help her and running off coffee trying to stay awake take her to her dr appointments and her therapy in orange every other day sitting in traffic listing to her scream cus she hates the car seat so much so I've started to come to terms with the possibility of a gtube I partially welcome it because this is no life to live this was EXACTLY what I didn't want her to go thru pain every day all day I can handle it I'm not that girl that will break down and if I do odds are you won't see it but I have had about enough of her being in pain it's not fair to her and I'll be damned if they send me home with no answers or solution tomorrow so if I get arrested for getting in to a fight with a dr tomorrow because he tells me they can't do anything someone please bail me out lol I hate being so cold now harlow dosnt smile or laugh or any of that yet cus she hasn't had the chance to cus of all this and it drives me nuts so much so it's hard for me to even look at my friends kids I already avoid social media I go on post updates and get off I rarely look at any thing so if you message me I'm so sorry if I don't get back right away I swear I'm not ignoring you it's just hard to be on there lately ... I still am unable to look at anything online about Harlows condition and I can't look at other baby's or kids with her condition I just haven't gotten there yet which sucks cus I feel like it would help me so much if I could just get over this hill I'm on but with time I got nothing but it! Well please pray for harlow tomorrow and I'm gunna be selfish please pray for me tomorrow I really need some strength I'm running pretty low lately ❤️

Well this sucks

Wednesday, February 22, 2017

So today sucked she had an appointment with her pediatrician and we're trying to figure out what it is that's going on with her stomach since every medicine hasn't worked all the formulas are not working either and so she has an appointment with a G.I. specialist next week so that he can see how she is digesting her formula and hopefully go from there she did say though that she may need a G-tube because what could be happening as her brain is not letting her digestive system know what to do so that's why she's having a hard time and if she does need one I'm going to be absolutely devastated because I thought we were in the clear after we left the Nicu Friday we have an appointment with the nutritionist in LA to go over this certain diet that she's gonna get put on and her pediatrician said that that can fix her acid reflex if that's the problem so I'm praying to God that that is all it is and that this formula is going to stop her seizures and her acid reflex I will literally consider that a miracle because I am petrified of her getting worse so that's what happened today at her appointment I finally broke down it's been a while I think I'm just so exhausted on putting the smile on my face and pretending everything is OK yes I'm grateful for her and yes things could be so much worse but this is also new to me and not being able to help your kid is absolutely horrible on the plus side if she does end up getting the G-tube and it does fix this this may be why she's unable to develop and learn for some things because she's constantly in pain and stuff so there's a Silverlining in there I don't know it's all hard it all sucks and I wish things were easier for us.  Tomorrow's a new day

Sorry I lagged!

Monday, February 20, 2017

 OK I'm finally going to do a blog post so sorry for my lagging it's been a busy couple weeks but to update everybody her eye exam it was pretty pointless didn't tell me anything new they said that we're going to have to wait with time to see what she can see and in six months they will reevaluate and see if glasses may help what she already has so whatever but she did have an appointment with the braille Institute they came by so they'll be working with her once a month as well as some other blind company that gives us free services so she has therapy every week she has occupational therapy through Kaiser once a month and two vision appointments every month so we're trying to get her all the opportunities we can as for her acid reflex we switched her formula and it seems to be helping but our newest battle is she hates car rides which wouldn't be so bad if she was just simply crying this girl gets her self so worked up she causes a seizure and drenches herself in sweat and the rest of the day is ruined. She also makes herself throw up because of how upset she is so I can't take her anywhere like seriously are you kidding me thank God I have my mom so I'm able to pop out really quick to get supplies if I need but I hate doing that because I should be able to bring her with me you know? So that's our newest battle trying to deal with that I wish I could say it was a car seat but she has more than enough room it's just her something about the car just does not make her happy let's see this Friday she has an appointment in LA pray for me because that car ride is going to be a nightmare but we meet with the drs to discuss putting her on a special formula to help with the seizures it's a slow process to work it takes about 6 months and I can only imagine the price of this stuff but like I said before if I have to take a loan out for it I will whatever works for her that's what matters  so please pray that it works! I can't even imagine being seizure free omg that would be amazing!!! My best friend and I had baby's a month apart and she came by today today was the first day I realize that my daughter isnt a normal baby I mean I've known it and I've heard it but today I really saw the difference he's a month behind her and he's doing things that she can't do or isn't doing and even though I knew this was gonna happen I guess I just was living in this fantasy world where my daughter was just going to keep up and it was gonna be a miracle but the realistic side of me knew this was gonna happen I just hope that it's a little bit not big chunks that she falls behind right now it's just the laughing smiling being involved acknowledging me and Bobby when we're talking to her I think a lot of it has to do with her vision not so much her brain but it's OK we've been preparing for this and luckily it's not all one big hit at once like it was when I gave birth to her it'll be slow things hopefully it stays that way at least I really don't feel like getting hit by a train again but at the same time it's kind of cool because I get to see what Harlow needs to learn next and what we need to work on but as for developmentally she's hanging in there so I think that's everything I want to say a special thank you to everybody who is supporting my Etsy shop I know I've said it before but you guys really have no idea how amazing it is and how helpful it is I'm able to pay for her medical expenses and that way we don't fall behind on bills so that is a huge stress relief as well as it's giving me something to keep me busy which is something I definitely need so thank you guys again from the bottom of my heart ❤️

Time flys..

Wednesday, February 8, 2017

As I lay here with Harlow sleeping on my chest listening her breathing I can't even begin to explain the feeling I get when I think about the past year coming up on February 13th that was the day I found out I was pregnant I can vividly picture that day I know exactly how I felt I can even remember down to the smells of the candles I had burning in the house I remember looking at those two little lines on the test in absolute complete shock we had been trying for close to 4 years and we were at the point in our marriage where it was wearing heavy on us we wanted a family but couldn't and then there it was two pink lines I had prayed and begged and cried for those two pink lines and then just like that they were there... it's a bitter sweet feeling because until June 3rd my pregnancy wasn't exactly a cake walk but I appreciated every bit of it I did my best not to complain I did my best not to get upset when i would get sick i  had 20 weeks of normalcy 20 weeks of being able to be pregnant and have a life 20 weeks where nothing was wrong ... I got the call on the 3rd of June that something was wrong and they didn't have a opening for us to come in until June 8th longest week of my life and my birthday is the 7th so you can imagine what kind of week that was... we went in and right from the get go we knew something wasn't right and it wasn't just a blurb on the scans they took us to a room where we sat and waited I also remember what I was wearing that day I remember the smell of the hospital I remember looking at Bobby and really looking at my husband and thinking this is it .. this is where our marriage will be tested from this day forward .. I remember grabbing his hand and holding on to it for dear life as they told us something was wrong with our daughters brain I also remember everything slowing down to almost nothing when they asked if we would like to abort her I remember looking at the dr and wondering if she really knew what she was asking if she really knew what she was suggesting before she could explain me and Bobby in unison said no that's not a option for us we got asked to abort another 4 times in my pregnancy.. they took us to another room to perform the ultra sound and then to do the amniocentesis I remember I was beyond scared out of my mind I remember looking at the ceiling in the room and thinking "what in the actual fuck...what is happening to my world right now" as they stuck the needle in my stomach I remember leaning to my left and holding on to Bobby trying not to cry or move they told me just a little more just a little more and I was thinking I would do anything for this little girl and I haven't even met her an at that point I realized I was a mom and hadn't even gave birth yet ... just..a...little..more ... they had finished and had left me to get dressed I turned to Bobby and exploded with tears and dropped to my knees I held on to being strong for so long and I pushed forward but I knew that this was just the beginning that there was nothing I could do I'm not aborting my baby so whatever is wrong .. it's there and that's that.. this really was just the beginning with in days I had fallen in to such a deep depression but I made sure I kept a smile on my face I never let Anyone know how hurt I really was this was where my friendships I started to push away and the paranoia set in I stopped going places stopped talking to people it was work home work home work home... it was so hard to function at this point with out falling apart every second of everyday I was put on meds to help (pregnancy safe) it was like putting a band aid on a bullet wound what was once a exciting time turned in to pure torture my best friends were pregnant and I couldn't even talk to them because ether I would scare them about their own pregnancys or make them feel bad for me and I didn't want ether so the moment you look forward to with your friends well not in the cards for me I guess.. my baby shower was right around the corner and I was so excited till the passing out started in yup out of no where just low blood pressure low blood sugar bam I'm on the floor one more thing to deal with with ... no way of fixing it baby shower happened and what do you know not only do I feel it coming on it doesn't leave the entire day I got to lay the on bathroom floor on what was supposed to be one of the best days I remember laying on the floor in the bathroom beyond grossed out but having no choice cus I needed the cold floor and holding my belly and praying just praying that I could get thru the day with out anyone knowing how bad things really were and that I could enjoy it and go home and fall apart just let me have one day I pulled it together enough to watch Bobby open the presents and then went home and cried that one more thing was robbed from me weekly stress test were in full swing $60 a week for the test ... started at week 29 I soon realized there's no way with a child with a medical condition like this that we would be able to move out of my moms that was just one test out of a whole bunch of other things I had done weekly and depending on what Harlow actually has there's just no way.. she may be a full time job which of course I'd do hands down but one more thing to get destroyed but yet we kept going we kept fighting ohhhh what I would give for it just to be hydrocephalus which is all they thought it was (not that that's any less concerning btw) it's just that has some what of a action plan .. I remember laying in bed holding my belly thinking this is the one and only time I'll ever get to do this because not only was it so hard to get pregnant I can't do this again I can't go thru this again mentally and physically and emotionally draining regardless if my next baby was perfect I wouldn't be able to be knowing what I know I'm grateful for taking the time to appreciate being pregnant with her even tho it was a very very hard time in my life now reading this please don't think I'm bitching or complaining or saying oh poor me because if you know me you know I don't like people to feel bad for me hence the fact I hid my true feelings my whole pregnancy and still do the only reason I'm so open about all of this is one I don't have to make eye contact lol (not my strong suit) and two because I learned that when your alone it gets a lot scarier so if someone reads this and says omg that's exactly how I feel I'm not alone then Harlow is here for yet another reason having me tell the story to help others so bare with me i try my best to be open and truthful
But the reason I grazed over this potion of our journey is to know that it was hard since that phone call I got at 10:23 am it's burned in to my memory but moments like this where I have her laying on me feeling her breath looking at her face and seeing the indents from my shirt on her cheek her little humming noises this is it this is why I fought so hard this is why I said I wouldn't abort her this is why standing in the hall way of the hospital with Bobby crying to him telling him I won't give up on this baby that it was all worth it it may not be a easy road but we're on it and we're sight seeing and we will make the best of this journey no matter how hard it hurts sometimes we have been humbled beyond belief and I hope for those of you who read this it's able to help you ❤️


Tuesday, February 7, 2017

So so far things have been just staying the same seizures here and there therapy for me and her Lol but for the last 4 days she has been on a good one crying and being so upset for nothing she's fed she's changed she's not tired but she just can't seem to get it together. The problem is is when she gets worked up she has a seizure so trying to keep her calm lately isn't working so lord help me 😫 but on the plus side we're going to be starting the process for her to have Enzo as her seizure therapy dog  which I'm so excited for cus he will be able to tell us when one is coming on and also he will get to come with us everywhere which if you know me you know I'm obsessed with my dog lol but also I'm excited to share the love and Volunteer and take him to see patients in the hospital that could use some cheering up cus also if you have met Enzo you know he loves people so silver longing folks gotta find it where you can... I had to cancel her hearing test due to the seizures but we know she can hear so that wasn't to upsetting her eye test is Friday so we will see how far she has come n how "blind" she really is so that's nerve wracking but kinda exciting at the same time Harlows therapy has been going really well and she thinks that Harlow is making great progress so I'm happy about that too but again comparison will kill you every time cus I see other baby's her Age and they are further along then her already but I try to stay positive all baby's develop at their own pace so that's what's going on!

Talk to you guys soon
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